“I Don't Have to be Sick to Still Be Worthy”: The Barriers Experienced by Adolescent and Young Adult Cancer Survivors in New Zealand

Abstract

Purpose:

To identify the spectrum and nature of survivorship barriers experienced by New Zealand's adolescent and young adult (AYA) cancer survivor population. In addition, we explore associations between survivorship barriers and sociodemographic characteristics, cancer type, and day-to-day happiness following the end of treatment.

Methodology:

Participants were recruited for the online survey from AYA cancer service patient databases. Eligibility criteria included: aged 12–24 years at diagnosis, diagnosed between 2010 and 2019, and completed treatment at least one year prior. The analysis focused on 11 barriers (domains, issues, or concerns) which respondents may have faced during survivorship.

Results:

Two hundred and eighteen AYA survivors participated in the study. The mean number of impactful survivorship barriers was 2.5 (standard deviation 1.7), with 13 respondents (6.0%) reporting no barriers of concern and 31 (14.2%) reporting 5 or more. A higher number of impactful barriers was associated with lower day-to-day happiness (r = −0.34, p ≤ 0.001). The most commonly identified impactful survivorship barriers were mental health (50.0% of respondents), physical health (43.1%), thinking and memory (33.0%), education and work (27.1%), social life (26.1%), and fertility (22.5%). Subgroup analysis identified significant differences according to gender, age at diagnosis, tumor group, ethnicity, and time since diagnosis. Poor access to health care and unmet needs were common themes. Positive impacts, particularly with regards to family relationships, were also identified.

Conclusion:

These results will inform initiatives to improve AYA survivorship care in New Zealand. Gaps in service delivery and funding will need to be overcome by utilizing innovative strategies and broad sector engagement.

Introduction

Adolescent and young adult (AYA) cancer patients face a number of barriers that may impede their ability to successfully transition to post-treatment life. International studies on this topic have highlighted a multitude of medical and psychosocial challenges experienced by the AYA cancer survivor population. AYA survivors experience challenges with work and education reentry, cognitive dysfunction and psychological distress, physical challenges, fertility concerns, and unmet information needs regarding cancer recurrence risk and late effects of treatment.^1–4 They also experience poorer health-related quality of life in the domains of physical, mental, and sexual health compared to healthy age matched peers.^5–8

Further to the medical and psychosocial difficulties of survivorship, AYA survivors face the added complexity of progressing through the already challenging adolescent developmental milestones, such as self- and sexual-identity formation and increasing personal and financial independence from family.⁹ The wider long-term cost of poor AYA survivorship care is becoming well recognized. It is during the AYA years that individuals complete higher education or employment training, which ultimately leads to long-term employment and financial productivity. Therefore, the consequences of unaddressed AYA survivorship barriers extend to beyond the survivor themselves, where collectively, years of lost productivity and limited earning potential can negatively impact society as a whole.¹⁰

There may be discrepancies between what AYA survivors and their health care providers believe to be the most relevant survivorship issues. This was highlighted in a recent study where AYA survivors more frequently selected a number of positive formulated questions such as happiness and usefulness, while health care providers focused more so on physical symptoms such as pain and fatigue.¹¹ Although some AYA survivorship studies have focused on one survivorship barrier in isolation, such studies cannot determine which barriers are considered the most impactful by the AYAs themselves or highlight the wide range of barriers which a single AYA survivor may experience.

In addition, there is some evidence to suggest that unmet survivorship needs in some domains can cause issues in other areas resulting in a clustering effect.^4,12–15 For example, physical and cognitive difficulties can impact on educational and work performance, which in turn influences future plans. Psychological distress can contribute to social isolation, thus hindering relationship (both romantic and friendship) building. By examining a range of survivorship barriers, it is also possible to identify whether there is a relationship between the number of survivorship barriers encountered and patient reported quality of life measures such as day-to-day happiness after treatment.

In New Zealand, AYA cancer patients are defined as those diagnosed between 12–24 years of age. Over the past decade, the AYA Cancer Network Aotearoa and AYA Cancer Services across the country have focused on addressing previously identified survival disparities such as those observed for Māori and Pasifika AYA diagnosed with bone tumors or acute lymphoblastic leukemia.^16,17 This focus has led to a “closing of the gap” and an overall improvement of our 5-year AYA cancer survival to 84%.¹⁸

While it is pleasing that there are more survivors of AYA cancer than ever before, we know that for most of these survivors, their survivorship follow-up will be limited to disease surveillance, with little access to support for the many other important aspects of AYA survivorship care. While we now have a clear understanding of AYA cancer survival and the related disparities that must continue to be addressed, little is currently known about our AYA survivorship experiences and the disparities which may exist in accessing high quality survivorship care.

The AYA Cancer Network Aotearoa recently completed Whakarongo Mai, a patient experience survey. Although this survey primarily investigated active treatment issues, some survivorship barriers were also identified, including the need for improved information provision and greater assistance with school and work reentry.¹⁹ The study findings highlighted the need for a broader investigation of AYA survivorship issues.

Similar to the AYA HOPE (USA^5,6) and Transitions (Canada) study,^2,20 this study broadly investigates AYA survivorship barriers. Following an extensive review of the AYA literature, we have identified 11 different evidence-based AYA survivorship barrier themes. These are: follow-up plans and information provision; fertility; finances; education and work; sex and sexuality; physical health; mental health; social life; thinking and memory; culture and ethnicity; and gender identity. We aim to establish the extent and nature and the impact of the most prevalent AYA survivorship barriers, as experienced by New Zealand's growing AYA survivor population. A secondary aim is to explore associations between survivorship barriers and sociodemographic and medical characteristics in order to identify subgroups of AYA who would most benefit from targeted interventions. The results of this study will be used to inform future interventions to lessen the impact of the most prevalent and impactful survivorship barriers for New Zealand's AYA survivors.

Materials and Methods

The New Zealand AYA Survivorship Study is an observational multicenter study, utilizing an online survey platform. Ethics review was completed through both the National Ethics Advisory Committee and the regional District Health Board (DHB) ethics committees.

Survey design

A literature review identified the most common AYA survivorship barriers.^1–9 These included: follow-up plans and information provision; fertility; finances; education and work; sex and sexuality; physical health; mental health; social life; thinking and memory; culture and ethnicity; and gender identity. The survey was constructed through consultation with AYA survivors and AYA cancer health professionals. The opening question asked respondents to rate how happy they felt about their day-to-day life since treatment finished on a 1–10 scale (1 = very unhappy, 10 = very happy). Respondents were then asked about each of the 11 survivorship barriers in turn, including whether the barrier was experienced, help was sought, and their needs were met. The concluding question asked respondents to identify which barrier(s) had impacted them the most.

The survey utilized a variety of scales and response options as appropriate to each question. The survey also included free text questions for each section to provide respondents with the opportunity to add contextual comments if they wished to do so. Although the original study design did not plan for an analysis of these qualitative responses, an analysis of the key themes was subsequently undertaken due to the unexpectedly high number of responses that were received and the valuable insights that they provided (see Supplementary Data for survey).

Recruitment

Eight hundred and fifty-eight potential respondents were identified from regional AYA Cancer Service patient databases. Eligibility criteria included: cancer diagnosis between 2010 and 2019; aged 12–24 years at diagnosis; and treatment completion before study commencement. Initial contact was undertaken either by telephone or text, with inclusion of a brief study introduction and link to the online survey. Two reminder texts were sent within the next six weeks. Respondents were required to provide informed consent in the first section of the survey.

Data were collected and securely stored on the online survey platform. When the survey period ended, the data were transferred to password protected spreadsheet files. From the initial 226 respondents, eight were removed from the final dataset due to not meeting the study criteria (n = 5), incompleteness (n = 1), and duplicate submissions (n = 2). The final response rate was 25.4%.

Statistical analysis

Descriptive statistics were calculated for all survey items included in each of the 11 domains.

Data were analyzed by total population; gender; prioritized ethnicity (Māori, Pasifika, Asian, and non-Māori/Pasifika/Asian); tumor group (leukemias, lymphomas, central nervous system [CNS] tumors, sarcomas, germ cell tumors, and all other); years since diagnosis (1–2, 3–5, and 6+); and age at diagnosis (12–15, 16–19, and 20–24 years). All free text responses for each domain were read and collated by one of the members of the research team and coded using an inductive approach. Thematic analysis coding was used to identify recurring patterns and themes. An illustrative quote for each theme was selected for inclusion in the qualitative summary table. Respondent identifiers were retained to ensure that the same participant was not quoted more than once.

The final survey question asked for the survivorship barrier(s) that had impacted the young person the most. Across each domain, direct logistic regression was performed to assess the influence of age, gender, ethnicity, time since diagnosis, and cancer type on the likelihood that respondents would identify the barrier as being of impact. Adjusted odds ratios (AOR) with 95% confidence intervals (CIs) were calculated and reported for the six barriers most frequently reported. Student t-tests and one-way between groups analysis of variance—with planned post hoc comparisons—were conducted to explore the relationships between respondent characteristics and the number of areas of impact reported. Spearman rank order correlation was used to explore the relationship between the number of major barriers reported by respondents and their day-to-day happiness score. Data were analyzed using SPSS Version 27.0 (IBM Corp., Armonk, NY, USA). All statistical tests were two-sided, and p values <0.05 were considered statistically significant.

Results

Respondent characteristics

The 218 respondents had a median age at diagnosis of 19 years and a median time of five years since diagnosis. While the respondent characteristics were representative of the total AYA population with regards to age at diagnosis and gender, AYA of prioritized Māori ethnicity was underrepresented, making up 13.3% of the respondents compared to 20.2% of the AYA population¹⁸ (see Table 1). Those with carcinoma (n = 19, 8.7%) and melanoma (n = 3, 1.4%) were also underrepresented given that carcinomas and melanoma account for 21% and 11.0% of AYA cases in New Zealand, respectively.¹⁸ Carcinomas (thyroid n = 9, breast n = 4, colorectal n = 4, nasopharyngeal n = 1, and cervical n = 1) and melanoma were therefore amalgamated into the “All Other” diagnostic group. Half of the respondents were in full time work, and 32.1% were in school or higher education.

Table 1.

Respondent Characteristics

	n	%
Age at diagnosis
12–15 Years	37	17.0
16–19 Years	88	40.4
20–24 Years	93	42.7
Gender identity
Female	111	50.9
Male	105	48.2
Nonbinary	2	0.9
Prioritized ethnicity
Māori	29	13.3
Pasifika	15	6.9
Asian	17	7.8
Non-Māori/Pasifika/Asian	157	72.0
Work/education status
Studying at high school	11	5.0
Studying at university/polytechnic	30	13.8
Workforce training	2	0.9
In full time work	109	50.0
In part time work	10	4.6
Both work and study	27	12.4
Not in paid work or study	29	13.3
Diagnosis
Lymphoma	76	34.9
Leukemia	41	18.8
Germ cell tumor	32	14.7
Sarcoma	27	12.4
CNS tumor	18	8.3
All other	24	11.0
Years since diagnosis
1–2 Years	47	21.6
3–5 Years	66	30.2
6 Years +	105	48.2
Total	218	100.0

CNS, central nervous system.

Most impactful barriers

Respondents were asked to identify their most impactful survivorship barrier and were invited to select multiple options if appropriate. The mean number of barriers was 2.5 (standard deviation [SD] 1.7) with 13 respondents (6.0%) reporting no barriers of concern and 31 (14.2%) respondents reporting five or more. The Results section will focus on the six survivorship barriers that were selected as most impactful by more than 20% of respondents (see Supplementary Tables S1 and S2 for additional analyses for the less frequently reported barriers).

The overall mean happiness rating was 7.8 out of 10 (SD 1.9), with 1 in 4 respondents (24.8%) rating their day-to-day happiness as 10 out of 10. There was a moderate negative correlation between happiness rating and the number of major barriers reported, r = −0.34, p ≤ 0.001, with a higher number of impactful barriers associated with lower day-to-day happiness.

Predictors of the most impactful barriers

Table 2 presents the mean number of barriers and the six barriers of greatest impact most frequently reported by respondents, analyzed according to gender, age, ethnicity, time since diagnosis, and cancer type. On average, a significantly larger number of barriers were reported by females (M = 2.65) compared to males (M = 2.21, p = 0.046) and those of Asian prioritized ethnicity (M = 3.53) compared to non-Māori/Pasifika/Asian (M = 2.21, p = 0.008).

Table 2.

Most Impactful Survivorship Barriers for New Zealand Adolescent and Young Adults, According to Gender, Age, Ethnicity, Time Since Diagnosis, and Cancer Type

	n	Total impactful barriers selected		Most frequently reported impactful survivorship barriers
		Total impactful barriers selected		Mental health		Physical health		Thinking and memory		Education and work		Social life		Fertility
		M (SD)	p	%	AOR (95% CI)	%	AOR (95% CI)	%	AOR (95% CI)	%	AOR (95% CI)	%	AOR (95% CI)	%	AOR (95% CI)
Gender^a
Male	105	2.2 (1.7)	0.046	42.9	REF	43.8	REF	26.7	REF	26.7	REF	21.0	REF	19.0	REF
Female	111	2.7 (1.5)	0.046	55.9	1.55 (0.86–2.79)	41.4	0.94 (0.53–1.69)	37.8	1.82 (0.98–3.51)	27.0	1.13 (0.54–2.33)	29.7	1.88 (0.93–3.82)	26.1	1.60 (0.79–3.24)
Age at diagnosis
12–15 Years	37	2.7 (1.7)	0.486	54.1	REF	43.2	REF	43.2	REF	27.0	REF	48.6	REF	18.9	REF
16–19 Years	88	2.5 (1.6)		53.4	0.90 (0.39–2.07)	44.3	1.12 (0.49–2.55)	33.0	0.61 (0.26–1.45)	28.4	0.94 (0.34–2.60)	27.3	0.31 (0.13–0.75)	18.2	0.97 (0.34–2.74)
20–24 Years	93	2.3 (1.7)		45.2	0.63 (0.27–1.44)	41.9	1.18 (0.52–2.69)	29.0	0.47 (0.19–1.13)	25.8	1.28 (0.45–3.62)	16.1	0.16 (0.06–0.42)	28.0	1.72 (0.63–4.70)
Ethnicity
Non-Māori/Pasifika/Asian	157	2.2 (1.5)	<0.001^b	45.2	REF	41.4	REF	29.3	REF	22.3	REF	21.0	REF	24.2	REF
Māori	29	3.0 (1.8)		55.2	1.66 (0.70–3.91)	51.7	1.49 (0.65–3.42)	41.4	1.48 (0.62–3.56)	31.0	1.41 (0.42–3.81)	31.0	1.86 (0.72–4.80)	10.3	0.35 (0.10–1.29)
Pasifika	15	3.1 (2.1)		60.0	2.50 (0.74–8.37)	40.0	0.83 (0.26–2.65)	20.0	0.53 (0.13–2.14)	40.0	1.60 (0.46–5.57)	40.0	2.27 (0.65–7.98)	33.3	2.17 (0.59–7.86)
Asian	17	3.5 (1.7)		76.5	3.46 (1.02–11.72)	47.0	1.12 (0.38–3.32)	64.7	5.38 (1.72–16.80)	52.9	4.57 (1.39–15.01)	52.9	5.93 (1.79–19.64)	17.6	0.60 (0.14–2.50)
Years since diagnosis
1–2 Years	47	2.4 (1.4)	0.736	44.7	REF	46.8	REF	31.9	REF	42.6	REF	25.5	REF	10.6	REF
3–5 Years	66	2.6 (1.5)		51.5	1.86 (0.81–4.28)	45.5	0.95 (0.42–2.14)	40.9	0.94 (0.39–2.26)	36.4	0.67 (0.28–1.65)	25.8	0.88 (0.33–2.38)	19.7	2.66 (0.81–8.73)
6+ Years	105	2.4 (1.9)		52.4	1.81 (0.86–3.83)	41.9	0.76 (0.36–1.59)	30.5	0.73 (0.33–1.65)	15.2	0.19 (0.08–0.48)	26.7	1.06 (0.44–2.56)	31.4	4.27 (1.45–12.59)
Diagnostic group
Lymphomas	76	2.2 (1.6)	0.645	55.3	REF	39.5	REF	32.9	REF	13.2	REF	21.4	REF	21.1	REF
Leukemias	41	2.6 (1.8)		43.9	0.51 (0.22–1.16)	46.3	1.42 (0.64–3.20)	34.1	1.09 (0.45–2.62)	31.7	4.46 (1.54–12.97)	31.7	1.25 (0.48–3.23)	22.0	0.97 (0.36–2.63)
Germ cell tumors	32	2.6 (1.8)		46.9	0.68 (0.28–1.64)	40.6	1.10 (0.46–2.63)	28.1	1.05 (0.40–2.75)	34.4	4.96 (1.66–14.81)	31.3	1.77 (0.63–4.94)	25.0	1.12 (0.39–3.25)
Sarcomas	27	2.7 (1.5)		59.3	1.08 (0.42–2.75)	63.0	2.69 (1.06–6.83)	25.9	0.59 (0.20–1.70)	44.4	6.40 (2.06–19.88)	29.6	1.01 (0.34–2.98)	18.5	1.03 (0.31–3.39)
CNS tumors	18	2.4 (1.5)		16.7	0.13 (0.03–0.52)	33.3	0.76 (0.25–2.31)	50.0	2.30 (0.76–6.96)	33.3	4.46 (1.22–16.34)	16.7	0.65 (0.15–2.89)	22.2	0.90 (0.24–3.34)
All other	24	2.7 (1.7)		62.5	1.00 (0.36–2.82)	37.5	0.74 (0.26–2.12)	33.3	2.30 (0.76–6.96)	29.2	1.47 (0.38–5.73)	25.0	0.55 (0.14–2.15)	29.2	1.66 (0.53–5.20)
Total population	218	2.5 (1.7)	—	50.0	—	43.1	—	33.0	—	27.1	—	26.1	—	22.5	—

Due to small numbers, gender nonbinary has not been included in the gender analysis.

Post hoc Tukey's test showed that those from Asian ethnic groups reported a significantly higher number of impactful survivorship barriers than those who were non-Māori/Pasifika/Asian (p = 0.008). No other between-group differences in the number of impactful barriers reached statistical significance.

AOR, adjusted odds ratio; CI, confidence interval; CNS, central nervous system; M, mean; REF, reference group; SD, standard deviation.

Overall, 50% of respondents reported that mental health was an impactful barrier following the end of their cancer treatment. Those of Asian prioritized ethnicity were significantly more likely than the majority non-Māori/Pasifika/Asian group to report this as a major barrier (AOR 3.46, 95% CI 1.02–11.72). Compared to those with lymphoma, AYAs with CNS tumors were significantly less likely to report mental health as impactful (AOR 0.13, 95% CI 0.03–0.52).

Nearly two thirds of AYAs with sarcoma (63.0%) reported that their cancer and its treatment have had an ongoing major impact on their physical health (AOR 2.69, 95% CI 1.06–6.83).

AYA survivors of Asian ethnicity were also significantly more likely to report difficulties with their thinking and memory (64.7% compared with 29.3% of non-Māori/Pasifika/Asian, AOR 5.38, 95% CI 1.72–16.80). Although not reaching statistical significance, a notably high proportion of those with central nervous system tumors (50.0%) and young people 12–15 years (43.2%) also reported barriers with regard to thinking and memory.

Work and education barriers were identified as impactful for only 13.2% of those AYAs with lymphoma, significantly lower than for those with sarcomas (AOR 6.40, 95% CI 2.06–19.88), germ cell tumors (AOR 4.96, 95% CI 1.66–14.81), leukemia (AOR 4.46, 95% CI 1.54–12.97), and CNS tumors (AOR 4.46, 95% CI 1.22–16.34). Work and education barriers appeared to lessen over time; 42.6% of those recently off treatment reported work and education as an area of major impact compared to 15.2% of those six or more years off treatment (AOR 4.57, 95% CI 1.39–15.01).

There also appeared to be a reduction in cancer's impact on an AYA's social life over time. Those aged 12–15 years were significantly more likely to report their cancer as having had a major impact on their social life (48.6%) compared to those aged 16–19 years (27.3%, AOR 0.31, 95% CI 0.13–0.75) and 20–24 years (16.1%, AOR 0.16, 95% CI 0.06–0.42).

Conversely, fertility was identified as one of the domains of most impact by 31.4% of those 6 or more years off treatment compared to just 10.6% of those who were recently off treatment (AOR 4.27, 95% CI 1.45–12.59).

The most frequently reported survivorship barriers

In addition to asking about the survivorship barriers of greatest impact, respondents were also asked a series of questions covering each of the 11 survivorship barriers in turn. Questions included whether they encountered this survivorship barrier at any point since the end of their cancer treatment; whether help was sought; and, if so, whether their needs were met. As previously, we have focused on the six most frequently reported barriers (with additional results provided in Supplementary Table S2). Illustrative quotes from the optional free text comments field which concluded each section are provided in Table 3.

Table 3.

Key Themes from the Six Most Frequently Reported Survivorship Barriers for New Zealand Adolescent and Young Adults

	Key themes and illustrative quotes from free text responses
Mental health	Anxiety around the cancer returning: “I sometimes get quite stressed when I have health related issues. I always end up worrying that my cancer is reoccurring and I get very anxious and it's constantly on my mind.” Physical effects of cancer impacting on mental health: “Anxiety in social settings. It was particularly bad post treatment but still comes and goes—likely due to my ongoing alopecia.” “The mental health concerns were feelings of uselessness and self-hatred due to losing all of my muscle and athletic ability.” Difficulties in accessing appropriate support: “I did not qualify for mental health support locally in spite of everything I had been through and a referral from [my healthcare team].” “I had very severe depression and anxiety and all the services I went to seek help from weren't able to help much because of my complicated situation.”
Physical health	Ongoing physical symptoms being dismissed by health professionals: “I feel like they just say ‘yep that's an ongoing symptom’ and don't try and address the illness. It just gets chucked in the too hard basket.” “I found the tiredness to be the worst and often this would be kind of brushed off as just how it is.” A lack of support in accessing services: “The only thing I've had help with is my leg and seeing a physio—that I sorted. The hospital never organized for me to see someone.” Feelings of resignation that their physical symptoms are permanent: “My vision is poor and my eyes get very red, dry, and sore but the eye drops I get don't help very much so I have to live with it.” “Nothing they can do for me, it's lifelong now.”
Thinking and memory	Issues with memory, concentration, and information processing: “My memory is now extremely frustrating. My mind feels disorganised all the time and I find it difficult to think as quickly as I used to.” “It's harder to focus for long periods of time and committing information to memory has become a longer process.” Needing to work harder to achieve the same results: “Overall my grades are around the same—but… it takes a lot more effort to remember and apply information.” “As much as I struggle to absorb information as easily as I did prior to treatment, I've put in the extra effort to still achieve to the same standard.”
Education and work	Limitations to dreams or goals: “I stopped my education when I was diagnosed and didn't feel competent enough to pick it back up. I've felt lost ever since.” “I am too old to pursue what I had aspirations for as my treatment and recovery took three years.” “My treatment left me with the long term effects of not having the physical ability to run or jump so I'm unable to achieve the fitness goals to become a police officer.” Positive influence on dreams and goals for some: “Being in and out of hospital regularly for treatment and seeing what nurses do inspired me to change to nursing—I am now approaching my final year of studies and am absolutely loving it!”
Social life and relationships	Increased selectivity with friendships: “I removed ‘toxic’ friends from my life and are much more picky with my friend choices.” “I'm much stronger now. I don't have time for petty rubbish so my group of friends is tiny. I won't stand for people making dramas out of things that are no big deal.”
	Social anxiety and isolation: “I feel pretty insecure. I don't want people to think I chose this haircut and that I gained all this weight because I'm lazy.” “I feel more isolated and alone in the same situations - feeling “different” and not fitting in properly.” Increased social confidence: “Long term I feel like it has actually improved my confidence. It is something I have come through and survived and I like to be open about it being a part of my past.”
	Long term impact of cancer on romantic relationships: “We broke up a few years after I finished treatment but the long term impacts on my physical and mental health definitely played a part in the break up.” “I found it hard to open up about my experience with cancer and how I'm still extremely affected by what happened.”
	Increased closeness with family: “The experience definitely pulled our family closer.” “We are more understanding of each other and vigilant in keeping each other's wellbeing in check.”
Fertility	Decision regret: “I regret this quite a lot. I was not able to make a coherent decision of any sort at the time and it seemed like the easier/better thing to do at the time but given the shock of the situation we didn't really think it through further than keeping me alive.” Rushed decision making: “I decided not too because I already felt very ill and just wanted to start treatment ASAP to get me on the mend of the long journey ahead. Thinking back I don't think my head was in the right mind set especially after finding out about my diagnosis.” Uncomfortable processes: “I'm gender diverse and I was uncomfortable discussing this with doctors who I just met for the first time with an unsupportive family member being present.” A lack of information: “Not enough information and psychological support given. This is an ongoing thing for a young person that will affect their whole life and I think there could be better follow up and supports and education and information and options provided.”

Mental health

Of the respondents, 75.7% reported mental health concerns at some point since the end of their cancer treatment. Common themes included anxiety related to cancer recurrence and the physical effects of cancer and treatment's negative impact on mental health.

The most frequently reported mental health symptoms were anxiety (50.9%), low mood/depression (40.1%), sleep disturbances (33.0%), and post-traumatic stress (23.9%).

Difficulty in accessing appropriate support from a mental health professional was a common issue. Of the 137 respondents who identified at least one mental health symptom, 36.5% did not seek help and a further 28.5% sought help but it either did not meet their needs or they were unable to access it at all.

Physical health

Of the respondents, 78.4% reported experiencing physical symptoms that affected their day-to-day lives at some point since the end of their cancer treatment, with 51.4% stating that these symptoms continued.

Of those respondents who sought health professional help for their physical symptoms, 33.9% reported that their symptoms improved “a lot” (24.5%) or “a great deal” (9.4%), while 66.1% either felt their symptoms improved only “a little” (42.4%) or “not at all” (23.7%). Some respondents reported that they felt that health professionals were dismissive of their ongoing symptoms and were resigned to their symptoms never being resolved.

Thinking and memory

Of the respondents, 57.8% reported experiencing slowing in their thought processes since their treatment finished and 55.6% reported problems with their short-or long-term memory.

Of the respondents, 12.4% had noticed changes in all aspects of their academic or work performance compared to before diagnosis, while 45.9% had noticed changes in some aspects of academic or work performance.

Education and work

Of the respondents, 46.3% stated that they had to change their dreams or goals for education or work as a result of their cancer diagnosis or treatment effects. The free-text questions provided a spectrum of answers, with the majority speaking of limitations to dreams or goals. However, a small group indicated a broadening of their aspirations.

Of the respondents, 64.7% had experienced difficulties in returning to education or work. The most common difficulties were physical (73.8% of those who experienced difficulties), mood (61.0%), social (58.2%), and cognitive (56.7%).

Social life and relationships

This domain included questions relating to the following: friendship, social life, family, and romantic relationships.

Of the respondents, 51.8% had noticed changes in relationships with their friends since the end of treatment. Dominant free-text response themes included social isolation, relatability difficulties, and increased selectivity with friendships.

Of the respondents, 58.7% stated that their level of confidence in social settings had changed compared to before diagnosis. Of these respondents, 46.1% stated that their level of confidence had improved, while 53.9% stated that it had worsened.

Of those in a romantic relationship at the time of their diagnosis, 53.0% were no longer with their partner. Over two thirds of free-text responses conveyed that they felt that their cancer had played a part in their relationship ending.

Of the respondents, 35.8% stated that their family relationships had changed since the end of treatment. Seventy-four percent of those that provided a free-text answer indicated that their relationship with their family had strengthened.

Fertility

Of the respondents, 56.9% did not have fertility preservation completed. Of these, 29.0% reported that the reason for this was they were told that there was no time as treatment needed to start immediately, 28.2% were told that treatment would not affect their fertility, 16.9% chose not to, 2.4% were told they were too young to undertake fertility preservation, and 23.4% did not respond to this question.

Of the 43.1% of respondents who did have fertility preservation completed, 29.8% did not know who to talk to regarding accessing their stored sample for future use.

Of the respondents, 37.1% either felt “not very well informed” (25.2%) or “not informed at all” (11.9%) about their treatment related fertility risk.

While the majority of respondents had a fertility conversation before treatment, the free-text responses frequently expressed dissatisfaction with the decision-making process and the information that they were provided.

Discussion

This study highlights the myriad of barriers faced by AYA survivors in New Zealand. The overwhelming majority (94%) of AYAs who responded to this survey identified at least one impactful survivorship barrier, with one in seven reporting impactful barriers across five or more domains.

The finding that mental health is the most impactful barrier is concerning, but not surprising. For the most part, international studies have identified that AYA survivors do experience more mental health concerns than their noncancer peers.^4,21–23 The mental health status of New Zealand's young people is a long-standing concern. We have one of the highest rates of youth suicide in the Organization for Economic Cooperation and Development, with males and Māori youth disproportionately represented.^24,25 With three in four AYAs reporting mental health concerns at some point since completing treatment, increased access to mental health services for this patient population needs prioritization.

The majority of respondents had experienced physical health concerns during survivorship, with half stating that these concerns continue. Over 40% of respondents reported physical health as an impactful barrier. The sarcoma group was significantly more likely to report this barrier as impactful, which is supported by the finding that they were more likely to report difficulty with school and work reentry, particularly in relation to physical health concerns. Two-thirds of respondents reported either minimal or no improvement in symptoms after health provider review. This requires exploration at the patient and health provider level, to determine areas for possible service delivery improvement.

As seen in the AYA HOPE study,⁵ over half of our respondents had experienced memory problems, with similar numbers reporting slowing in their thought processes. Asian AYA survivors more frequently reported cognitive difficulties than other ethnic subgroups, while the younger age group and those respondents who had been survivors for a comparatively longer duration also trended toward higher cognitive difficulty reporting. Advocacy for increased access to neurocognitive assessment and intervention for AYA survivors in New Zealand is required, especially for those groups identified with greater needs.

Two thirds of respondents had experienced difficulties with returning to education or employment. Physical concerns were cited as the most common contributing factor, followed by mental health, social, and cognitive concerns. Almost half of the respondents had to change their dreams or goals for education or employment. This is a resonating finding, given that education and work achievement are essential for growth with adolescent developmental milestones such as identity formation and financial independence.⁹ Community engagement with motivated local employers may facilitate graduated work reentry pathways, while school reentry can be improved with structured liaisons between hospital and school, regular peer interaction opportunities, and resilience building.^9,26

Half of the respondents had noticed changes in their friend relationships. Relatability, “true” versus “fake” friendship, and a new perspective on “what is important” were common themes. The majority of those who had noticed a change in family relationships reported a positive change, echoing findings of a recent Australian study, where AYA survivors had comparatively better family functioning.²⁷ Many respondents reported an improvement in social confidence. This may have been related to post-traumatic growth, which has previously been studied in AYA survivors.²⁸ Therapeutic initiatives that enhance post-traumatic growth for AYA survivors, such as psychological interventions that encourage reappraisal, or positive reframing,²⁸ could be beneficial.

Although the majority of respondents recalled having fertility preservation discussed at diagnosis, the free-text answers suggested that these discussions were often rushed and brief. Respondents described disappointment with the initial process, poor recall of information provided, and decision regret. It is clear that the quality and frequency of oncofertility discussions need improvement. Regularly updated AYA oncofertility guidelines^29–33 should be made increasingly available to AYA health professionals to optimize information accuracy. Prioritization of time during follow-up clinics to revisit oncofertility is important also, given that many respondents did not feel well informed of their current fertility status or how to access their stored specimens.

Accessing help

A significant proportion of respondents who experienced either mental or physical health concerns did not seek help for their symptoms. Health related costs, poor health literacy, and emotional factors such as fear of recurrence, futility, and stigma have previously been discussed as contributing factors.^2,3,10,34 This finding has been identified in other AYA survivor cohorts also,^2,3 with AYA survivors identifying health provider barriers such as a perceived lack of time, not being listened to or dismissed, and lack of knowledge of age appropriate supports.^12,20 Knowing that it can take a lot for an AYA survivor to visit a health care provider, the fact that many respondents did not have their needs met is disappointing. In an attempt to address these issues in New Zealand, a guide for AYA survivors has recently been released by the AYA Cancer Network Aotearoa to inform AYAs of their rights and to provide advice on health system navigation and how to initiate conversations about their survivorship needs.

Relationships between survivorship barriers

When asked to select the most impactful survivorship barriers, the mean was 2.5 barriers per respondent. Our study also established a clear association between a greater number of impactful survivorship barriers and poorer day-to-day happiness. Of key interest is emerging research that suggests that certain survivorship barriers exist in association with others. For example, mental health concerns have been independently associated with physical health concerns, cognitive difficulty, information needs, financial toxicity, and social isolation.^4,12–15 This finding has significance when considering initiatives aimed at improving survivorship care in New Zealand. If barriers are addressed in clusters as opposed to being addressed singularly, then initiatives may be more successful.

Strengths and limitations

This is the first national AYA survivorship study in New Zealand, providing new information that can be used to improve future survivorship care. In terms of generalizability, areas of strength include near equal representation of male and female and broad representation of the AYA age group and time since diagnosis. Limitations with generalizability arose from comparatively low representations of Māori and those AYAs with carcinomas and melanoma. AYAs with melanoma and carcinomas are less frequently referred to AYA cancer services, in part, because treatment for these tumors (especially limited stage diagnoses) is less likely to require ongoing hospital-based care.

Our response rate of 25.4% is at the lower end of the spectrum compared to similar studies.^{6,13,14,20,26} The main mode of contacting respondents was by text message and although a more personalized method, such as telephone contact from a known AYA health provider, may have improved the response rate, this was unfortunately not feasible for all respondents due to funding and time constraints. In addition, a negative survivorship experience may have caused patients to decline participation in the study or have already caused them to be lost to follow-up. Due to these reasons, the risk of selection bias exists.

Conclusions

AYA survivors in New Zealand have difficulty in accessing survivorship care, and when they do, their needs are often not met. They experience particularly high rates of mental and physical health concerns, ongoing cognitive difficulties, and challenges with school and work reentry. Improvements with oncofertility related issues throughout survivorship are required. Our study also identified new information regarding changes in relationships for AYA survivors, with some experiencing strengthening of relationships amidst possible post-traumatic growth, while others experience loss of relationships and resulting social isolation and psychological distress.

Survivorship care in New Zealand is clearly not meeting the needs of AYA survivors. It is neither prioritized nor funded adequately within the current health care system. The solution is not simple. To address the significant survivorship barriers that our study has identified, services and organizations caring for AYA cancer survivors across the sector need to work collaboratively and find innovative strategies, such as tailored AYA survivorship clinics, to address the needs of this group.

Footnotes

Acknowledgments

The authors thank all the AYA survivors who participated in the study for generously sharing their experiences to help us make improvements for those who come after them. The authors also acknowledge the AYA survivors and AYA health providers who provided consultation and feedback during the survey construction process and those who assisted with the cohort identification and recruitment components of the study. The authors are grateful to the Ruth Cancer Spearing Research Trust for funding the summer studentship scholarship which allowed us to commence the study.

Authors' Contributions

Conceptualization: T.P., L.S., V.W., H.W., and K.B. Data curation: T.P. and K.B. Formal analysis: T.P. and K.B. Funding acquisition: T.P. and L.S. Investigation: T.P., V.W., L.S., E.P., J.R., K.K., S.M., T.V., K.B., and E.W. Methodology: T.P., L.S., E.W., and K.B. Project administration: T.P., L.S., V.W., H.D., E.P., H.W., and C.H. Resources: T.P., V.W., L.S., E.P., J.R., S.M., and T.V. Software: T.P. and K.B. Supervision: T.P., K.B., and H.W. Validation: K.B. Visualization: T.P. and K.B. Writing—original draft: T.P. and K.B. Writing—review and editing: T.P., K.B., H.W., E.P., L.S., V.W., H.D., J.R., C.H., K.K., T.V., S.M., and E.W.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

Data collection for the South Island participants was undertaken as part of a University of Otago 2020 Summer Studentship funded by the Ruth Cancer Spearing Research Trust. The AYA Cancer Network Aotearoa provided funding for the survey program subscription. The authors received no additional financial support for the research, authorship, and publication of this article.

Supplementary Material

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